7 replies to this topic

[hannibellemo]

Others have been posting about various sores in their mouths with our TKIs, especially it seems, with Sprycel. I would like to ask about oral herpes specifically. I occasionally have an outbreak at various locations inside my mouth, usually very small at the gum line. But, after running a fever this past weekend I now have an outbreak at just about every usual location inside my mouth and one on my lip!

I thought this was a bit excessive. I know that fevers can trigger outbreaks but I remember someone saying that when she/he started Sprycel he/his onc also wrote an Rx for zovirax.

Does anyone know about a connection between herpes and Sprycel? My blood work has been good, ANCs in the normal range, etc. I will discuss this further with my onc when I see him next month but would like something concrete to show him - anecdotal evidence if nothing else.

53 days until Spring!

Pat

[jrsboo]

Well, in the TMI catagory, the TKI's do something that trigger herpes outbreaks, not just cold sores.  It is quite common to be on Valtex and a TKI at the same time to avoid any new outbreaks or to make the outbreaks less severe.  If there is an outbreak, there is lidocaine jelly that the Dr. can prescribe that is put on the genitals to deaden the pain.

[hannibellemo]

Thanks, jrsboo, as you know, herpes and cold sores are synonymous but genital herpes are generally called 'lesions' while oral/nasal lesions get the more benign moniker, "cold sores". Genital herpes is simplex 2 and oral/nasal herpes is simplex 1 (or vice versa) but either can infect both areas.

At one time I asked my dentist for an Rx for acyclovir for my cold sores and he told me at that time, this was many years ago, that the medications didn't seem to work as well for oral/nasal lesions, people experienced breakthroughs. Wonder if that is still true?

Pat

[CallMeLucky]

What I have seen with individuals who deal with this is that the outbreaks are usually a sign of stress on the immune system.  Various things can trigger and usually not too much to do about it.  The anti-viral drugs can help if it is real bad.  Probiotics on a regular basis seem to help with less outbreaks.  Once it is there, if you can tolerate putting a little alcohol on it, that will usually dry it out and help it to go away sooner.  I think applying silver nitrate can also help with it.

[jrsboo]

Ouch.  Silver nitrate HURTS.  I had a problem with a surgery site not healing properly once (in my belly button of all places), and the nasty dr. put silver nitrate on it.  I just about hit the ceiling, knocked her hand away and told her I would never let her do that again. 

She scheduled surgery to fix the problem she had created the first time.

I cannot imagine putting it on a lesion in such a tender area. 

[CallMeLucky]

I was talking more about the mouth area, but I can certainly appreciate what you are saying.  I believe the silver nitrate kills the nerve root so the sore stops hurting and initially that hurts.  So yes, I can think of many places on the body where I wouldn't want to try that.

[HeatherZ]

When I was a teenager I had major issues with mouth ulcers.  I would get them all the time and they would last for weeks.  They would get so bad that my doctor would use the silver nitrate on them.  You are correct - it hurts like nothing else.  But after the initial pain I would have relief.  We later discovered I was getting the ulcers as an alergic reaction to artificial sweetners.  This is a problem as most coated pills contain some artifial sweetner.  I made sure to tell my Onc that I am getting ulcers pretty frquently since starting the G but I can't tell if it is because of the G or it is the coating on the G.  Either way, I don't want to have to get the silver nitrate thing again - I will just deal with it the best I can.

[jrsboo]

Silver nitrate works by burning off the layers of cells with a chemical burn. 

Very ouchy! 

For those with mouth sores, Magic Mouthwash is an analgesic that you can swish around and it numbs the sores.  Prescription only.